I have been trying for over 2 years (It will be 3 years in May) to figure out what my diagnosis should be. I don't fit any specific category but many of my symptoms do seem to fit Behcets. I don't however fit the profile. I'm 62 years old and mostly European descent. My first symptoms 3 years ago started with brain fog, fatigue, left sided tingling and burning. I also had leg spasms / shocks at that time. I did have mouth ulcers then but thought this was separate as I had mouth ulcers before this started and discounted them. All testing was negative except a boarder line ANA and double strand DNA. (Both negative a year later). I was trialed on Prednisone and all my symptoms went away, but was weened of and the fatigue and mouth ulcers returned. My Rheumatologist then trialed Plaquenil. My fatigue and brain fog went away after 5 months but the mouth ulcers took on a new life. I had constant ulcers for over 3 months along with boils near my vagina. I don't seem to have vaginal ulcers. I do have some skin bumps on my shins and scalp. My GP suggested trial of colchicine and this has cleared my mouth ulcers. I have a few break throughs but nothing like before. My next step is seeing a Bahcet's specialist in NY city. I live only 3 hours from the city and hope he has some answers. Any thoughts.
Do I have Behcet's?: I have been trying for over... - Behçet's UK
Do I have Behcet's?
Good afternoon Dustydander,
My experience is that signs and symptoms of a greater diagnosis appeared on a rolling basis, very rarely all at once, but stark in each individual appearance. The most helpful explanation is that my body generates from within "non-specific granulomatous lesions" which are visible externally in various places, and "non-specific ulcerations" biopsied internally, intestines. Location, like vulvar ulcerations, were just a matter of time - given the opportunity.
Similar to you, prednisone took care of a significant number of signs and symptoms. When vulvar ulcerations and perineal region lesions appeared, colchicine trial allowed me to wean off of prednisone and keep vulvar/mouth ulcerations at bay.
To keep my body from attacking various sites, internal and external, I need to remain on daily colchicine as well as strict weekly Humira injections. If I break from my regimen, 'something' strange or vague will happen.
My diagnosing and prescribing MD for the regimen are both Derm and Rheum. I also have GI as needed. There was not the opportunity to go to a Behcets specialist, although 'Behcets' is among the diagnoses for adequate treatment. I say 'among' because I do not have intense eye involvement or other hallmark Behcets. But I definitely benefit from treatment and cannot go without.
My skin is a pain in the arse. Figuratively. Medication treatment for all those weird bumps and boil-like lesions, painful whatever-s, definitely has to come from within. If my skin ever gets worse, lesion-wise, then the addition of Dapsone has been suggested.
Apologies as I rambled on. I am very interested to hear what the specialist in NYC has to offer. Keep plugging along. Chin up. Doing great! Keep asking questions.
Best regards.
Thanks for the input. I will post after my visit in NYC appointment. It's not until June but I'm on a short call list if someone cancels. I'm not sure all of my symptoms came at once or I just didn't pay attention to minor skin boils and mouth ulcers. At first the mouth ulcers were only once in awhile. When they became constant I started to try and find a cause/solution. I don't have major eye problems but they are very dry and at times burn. My biggest issue is trying to figure out what is auto immune related and what is age related. I hope the NYC visit will help.
Hi, it could be, but also check out other forms of vasculitis perhaps? Vasculitis UK is quite useful. Best wishes
Have you been keeping good record of how you feel how long a flare lasts. Pictures? Test results? Doctors records?
I am not diagnosed yet still trying to get one but I have a binder that all my things go in by doctors, tests, pictures.
From what I have learned it is hard to get a diagnosis and your flares can come and go.
Good luck.
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